Friday, April 6, 2018

Update long time in the writing.. Trips, Appt, Life?

I started this post about a month ago and have thought numerous times about how I should finish or delete or do something with it but being quite honest I just did not feel like it. Alas many wks later I am here writing now. It's been a busy few wks and yet in other ways at times  somewhat slow (maybe low key is the better way to put it)  - a lot going on but yet not a lot going on.
When I first started writing this post I was thinking a lot about and considering writing about the past few years and so much change. I couldn't really say why but had been thinking ALOT lately about the various people in my life I really miss - be it family or former Providers, my former Pastor (we do have a new one, he seems very nice, I think maybe it's just in part I miss all I learned from our Sunday School mtngs and that in turn helped me with SS).
 I keep thinking about 2yrs ago at this time and how incredibly hard that uncertainty was and how back then I wondered what a year out and 2 yrs out would be like.. Would I (especially) have a new Nrsgn that was atleast reasonably as good (ie caring) as Dr.Bragg had been? Would Dr.Bragg and I still have kept in touch (we do, I am thankful for her, sometimes when I want to pull out my hair in frustration she keeps me mildly more sane).
I remember wondering after the 3rd Open Heart Surgery (OHS, Mitral Valve) would that finally be the last 1 and would things settle?
                                        Time flies even when it doesn't
It's been 2 yrs this May since Dr.Bragg moved and honestly it hasn't gotten much easier. Now is a lot like it was before I had found her. In a way even I feel like she pulled my Team together, though I can't really say why that is. She was a good dr who cared and I miss her willingness to think outside the box for my not very typical headache/Hydrocephalus issues. She still helps my Neurosurgeon and as I said above I can ask her questions and we've become friends I guess you can say but I would give about anything to have her as my Nrsgn again more than anything else.
It's been 2.5yrs since the 3rd OHS and things are atleast stable from valve standpt. the replaced (mechanical) Mitral valve does have the moderate stenosis (narrowing) which is not what my Team hoped for and heart/heart muscle is working to hard to some extent but overall it's not presented to many problems. Heart rate (or rhythm I should say) has been an issue and especially so the past few weeks with some really weird episodes that where occurring with some frequency but my Heart Team is on top of that, ordered a Heart monitor which showed some different rhythms and changes but overall in the big picture it looked ok. One of those confusing things - story of my life really!
                                    Coumadin / INR - Never ending
Blood thinner levels have been all over the place but that likely has much to do with the headaches and nausea and so keeping that med level stable is like trying to I keeping balls juggled and in the air (I know terrible analogy).
We spend more time to low and like this wk with INR (blood thinner level) was to high - so increased chances for bleeding but that to is manageable. Even today's level at 8.12 or something in that very close range  (can't remember right off hand) I thankfully don't seem to be having any adverse affects, no bruising, no bleeding and if not for the actual lab test I wouldn't have guessed INR was so high. Last time it was in the 8 range I felt lightheaded and other weird things so I am glad atleast that hasn't been an issue this time!
  - Atleast my Primary dr is FANTASTIC about helping with this and has a standing order for the INR (blood thinner) lab test in her system so I can get it checked either in Madison (where my Primary dr., is) or in Milw., where my Heart Team is and both Teams can see the result through the shared 'Care Everywhere' system. I also get the results within and hour or two in the MyChart system at both Providers hospitals.
Today both my Primary drs office and my Cardiology Team called concerned about the level but they communicate with each other and with me so we figure it out and I know what to watch for.

Headaches -> Shunts -> Pressure
I saw my Neuro Endocrine dr., the other week. She's been part of my team way before I started seeing Dr.Bragg (would be 7yrs this May) and knows the changes that occur not only from our time with Dr.Bragg but before that when I was pre-shunt and then 1st shunted at FMLH.
Endocrine also ran new labs (which she does every 3-6mo) to re-check thyroid level which has been an issue in the past but stabilized once we got cortisol (hypothalamus/pituitary gland issues (cortisol levels) stabilized). The thyroid level has been intermittently going awry likely due to the newest heart med I have been on (Amiodarone) so she re-ran those labs to monitor and results thankfully came back fine.
                          Boston Marathon - Running for Rare
In 1.5wks I fly out to Boston for my 6th (?) year on the Running for Rare Team - this year will be my 1st year staying in a hotel while out there for the marathon so I am a bit nervous but I think I have everything sorted and figured out for  getting to the various places I need to. The biggest being of course Monday morning to our marathon Team mtng spot in Wellesley, I am thinking i'll take the train from my hotel in Boston to Wellesley, it looks like from directions 1 of the Team runners gave me i'll have to switch trains once.
 After the race 1 of the NORD-Race Team organizers offered to give me a ride to the Team get together and then back to my hotel afterwards. My hotel also has a shuttle to/from the airport and to my Appt on Tues morning with my Genetics dr. at Boston Children's so overall shouldn't be bad. Just my need to be organized makes me a bit OCD about having all the details written down and mapped out!

Should be fun if not I get a little pent up in the leading up to making sure I have everything arranged, packed and I get to the airport on time (I am flying out of Milwaukee which I haven't done in a couple years - it's not a huge airport but more difficult to get to then is Dane County (Madison)'s airport!

Otherwise this week I cancelled and haven't yet rescheduled the Peds Neurosurgery Appt (just wasn't feeling like dealing with it) and PMR rescheduled botox which was today (I went to the Appt and my Dr. did map out a new approach she'd like to try).
      Aldurazyme (Weekly infusion) Anti-body test
The one lab test my PCP had ordered and came back is my Infusion antibody level had been climbing for a while (not a good thing) but this result came back completely normal! So unusual BUT was happy to hear this! Perhaps the pre-infusion zyrtec along with my infusing over roughly 6hrs now (at FMLH I infused over 5hrs, which is still longer than the typical recommended run time) has helped calm my bodies response down?!? Whatever the case is good news!
Will try to update sooner next time, perhaps after I get back from Boston and Los Angeles (week 16 Humira study visit).
Thanks for stopping by,


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